Tell Congress: We Deserve a Voice in Healthcare!

We insist that on engaging patients, caregivers, and people living with incurable diseases or lifelong disabilities in health care decision-making.

We want to be at the center of health care.

We want policies to explicitly empower consumers, patients and providers.

We want to know what decisions about our health are being made by the government.

We want a health care system that rewards the outcomes that matter to us as patients and participants in this nation’s health system.

We reject the notion that we should be bundled into one-size-fits-all care models, or valued against one-size-fits-all judgments of cost-effectiveness. Don’t tell us what we’re worth – ask us what we value.

None of us is average. We are unique individuals with different genetics, characteristics, needs and preferences. Especially in this promising new age of personalized medicine, we are confounded by proposals in vital programs like Medicare that aim to eliminate, rather than empower, choice of treatments.

Join me to call on all health care stakeholders to recognize our importance and our movement for greater say in our own health care. We urge both the media and politicians to take heed of what matters to us… because in the end, we are all patients.

My Story and Why this is Important to Me

I wanted to become a Catholic priest long before I ever thought about becoming a politician. However, my dreams were short-lived after I was diagnosed with epilepsy during a required medical examination before I was admitted into the seminary. The doctor explained that a law of the Catholic Church prohibited people living with epilepsy from entering the priesthood. Though potentially earth-shattering news for a young man with a religious vocation, my immediate feelings were that of liberation – I had been experiencing seizures ever since a car accident on my family’s farm when I was 15, and the news finally allowed me to understand what was happening.

Walking out of the doctor’s office, I remember clearly getting into my car and thinking things were better. Absolutely. This is great. I know what’s going on, I thought. So I can’t be a priest—big deal—I can do something else.

I wanted to be a priest, but realized at that point that you can’t do everything you want in life. However, my feeling of acceptance did not last long as I soon discovered that my diagnosis severely limited my life’s prospects far beyond being able to become a priest. Shortly after receiving my diagnosis, the State of California revoked my driver’s license, I was dropped from my health insurance, and I could no longer find a job.

It is my history with epilepsy that inspired me to become a politician and led me to author the Americans with Disabilities Act (ADA). It is also the reason the next president must hold themselves accountable to patients and people with disabilities.

That’s why I am calling on people to sign this petition, in order to continue the legacy of the ADA and ensure that patients and people with disabilities are at the center of the conversation when determining their healthcare.

Over the last few years, I’ve been very outspoken on the need to engage patients and people with disabilities in efforts to define the value of health care. Engagement has become my ministry because, frankly, what we often find is “token” engagement – a pat on the head, with no real impact on policy development and implementation. As a result, we are too often the victims of a paternalistic health care system that seeks to disempower us in making healthcare decisions by telling us what we need without asking what we value.

As a patient with epilepsy, I was proud when over 60 organizations representing a diverse group of patients and participants in the health system – including those with a range of cancers; degenerative, cardiovascular, neurological and pulmonary diseases; injuries; mental illness; disabilities; and caregivers – called upon the Presidential candidates to heed our concerns, and to give individuals like me a voice in health care.